Living with ALS can be an emotional roller coaster. However, I’ve found that when I round the bend and find humor in a situation, I’m sure to have a smooth ride ahead. Let me share my latest experience with you. Before ALS, my life was filled with moving.
Note: This story was updated Sept. 25, 2023, to correct that TW001 uses the same active ingredient as Radicava and Radicava ORS but is a different therapy. Treeway has chosen Specialised Therapeutics Asia, known as ST, as its partner to market TW001, an oral formulation of edaravone, for…
Have you ever tried to assemble something or repair something only to finally give up and seek help? Such episodes were among my greatest frustrations before I was stricken with ALS. In retrospect, they feel like mere child’s play when compared with what I go through now. As a…
Mutations in the C9ORF7 gene, the most common genetic cause of amyotrophic lateral sclerosis (ALS), lead to defects in the stem cells needed for brain development in the early stages of life, a new study shows. In animal models of the disease, this resulted in smaller than normal volumes…
We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…
Treatment with CNM-Au8 was found to significantly delay disease progression and prolong survival, by more than 1.5 years, among adults with early-stage amyotrophic lateral sclerosis (ALS) in the RESCUE-ALS trial and its open-label extension phase. That’s according to two different statistical analyses, which overall showed that patients who…
A new two-year, $400,000 grant will support studies — by EverythingALS and the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital (MGH) — aimed at identifying early digital diagnostic markers in amyotrophic lateral sclerosis (ALS). The award, from ALS Finding a Cure…
A number of years ago, during my first year of learning to live with ALS, I promised myself that I’d show up every single day. At that time, my notion of showing up meant my goal was simply to get up, get dressed, and go sit in the…
While eating a high-calorie diet is safe and well tolerated, it does not appear to slow disease progression or reduce the risk of death in people with amyotrophic lateral sclerosis (ALS), a review of published clinical trials found. Combining data from multiple trials helps to create a single, more…
Some $2 million in new grants from two U.S. nonprofits are seeking to help scientists globally to find ways to slash the time it takes for an amyotrophic lateral sclerosis (ALS) diagnosis. It’s now estimated to take up to 16 months from symptom onset before most individuals receive a…
